Health policy (Amsterdam, Netherlands) · 2012
Delphi approach to select rare diseases for a European representative survey. The BURQOL-RD study.
СтатьяНазвание и аннотация: Перевод в очереди
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Linertová Renata, Serrano-Aguilar Pedro, Posada-de-la-Paz Manuel, Hens-Pérez Manuel, Kanavos Panos, Taruscio Domenica, Schieppati Arrigo, Stefanov Rumen, Péntek Márta, Delgado Claudia, von der Schulenburg Johann-Matthias Graf, Persson Ulf, Chevreul Karine, Fattore Giovanni, Worbes-Cerezo Melany, Sefton Mark, López-Bastida Julio, BURQOL-RD Research Group
Аннотация
OBJECTIVES: The BURQOL-RD project is intended to develop a disease based model capable of quantifying the socio-economic burden and health-related quality of life for patients with rare diseases (RDs) and their caregivers in Europe. We described the methodology used to select a set of 10 RDs to be approached in a pilot study.
METHODS: BURQOL-RD project includes 23 partners from 8 European countries: Spain, UK, France, Germany, Sweden, Italy, Hungary and Bulgaria. A two-round Delphi panels in combination with Carroll diagram was used to generate consensus in the selection of the 10 RDs among the project participants.
RESULTS: The two Delphi rounds yielded a prioritised list, to which the Carroll diagram was applied, taking into account three determinants: prevalence, availability of effective treatment and need for carer. The final set of RD to be studied was obtained: cystic fibrosis, Prader-Willi syndrome, haemophilia, duchenne muscular dystrophy, epidermolysis bullosa, fragile X syndrome, scleroderma, mucopolysaccharidosis, juvenile idiopathic arthritis and histiocytosis.
CONCLUSIONS: This methodology permitted the generation of an equilibrated set of RDs for the pilot study of BURQOL-RD project. The model will be suitable for application in a wide range of RDs.
METHODS: BURQOL-RD project includes 23 partners from 8 European countries: Spain, UK, France, Germany, Sweden, Italy, Hungary and Bulgaria. A two-round Delphi panels in combination with Carroll diagram was used to generate consensus in the selection of the 10 RDs among the project participants.
RESULTS: The two Delphi rounds yielded a prioritised list, to which the Carroll diagram was applied, taking into account three determinants: prevalence, availability of effective treatment and need for carer. The final set of RD to be studied was obtained: cystic fibrosis, Prader-Willi syndrome, haemophilia, duchenne muscular dystrophy, epidermolysis bullosa, fragile X syndrome, scleroderma, mucopolysaccharidosis, juvenile idiopathic arthritis and histiocytosis.
CONCLUSIONS: This methodology permitted the generation of an equilibrated set of RDs for the pilot study of BURQOL-RD project. The model will be suitable for application in a wide range of RDs.